Autism and Life Transitions: Hard Lessons Learned & Taught as a Person-Centered Planning Facilitator
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In December of 2015, I presented this webinar to members of the National Association for Dual Diagnoses (thenadd.org). I've been conducting Person-Centered Plans for 4 years, and over that time I've seen a number of disturbing trends around the lack of understanding and planning for preparedness in transitioning students; in particular, in the areas of independent skill building specific to the anticipated environment, and personal safety skills. I feel it's important to talk about what I've observed and how my team of co-facilitators and I have identified and tackled these issues within the PCP process. I hope that the "lessons learned" will assist people in planning for IEP/ISP goals that can help maximize success. I offer it free to anyone who would like to attend.
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Autism and Life Transitions: Hard Lessons Learned & Taught as a Person-Centered Planning Facilitator
- 1. ASD AND LIFE TRANSITIONS Hard Lessons Learned and Taught as a Person-Centered Planning Facilitator Cheryl Ryan Chan, presenter
- 2. Who I Am Who I Am NOT â˘âŻ PCP facilitator, introduced in 2011 to the PCP world, trained in Toronto & NH, now developing a practice. â˘âŻ Mom to a 23 year-old severely impacted by autism. â˘âŻ Marketing, Development and Social Media strategist by trade. â˘âŻ Community activist, networker, public speaker. â˘âŻ An educator or education specialist. â˘âŻ An ABA specialist. â˘âŻ An advocate. â˘âŻ A paid representative of any organization, company or product. â˘âŻ An attorney. You cannot hope to improve the world without first improving the individuals. To that end, each of us must work for our own improvement and, at the same time, share a general responsibility to all humanity; our particular duty being to aid those to whom we think we can be most useful. â Marie Curie
- 3. Why I am doing this â˘âŻ Seeing regular patterns of lack of preparedness in clients who are preparing to transition to adulthood. Skills are being taught without consideration for sustainability, safety, and other micro skill-sets that are critical building blocks to mastery. â˘âŻ Individualization is still not entirely practiced â skill sets are being taught that are not appropriate to the actual anticipated future environment. â˘âŻ Parents are struggling to understand the importance of a support system for their child, outside of themselves; the concept is being treated as an option or ânice ideaâ â not a component of success. â˘âŻ By arming educators and parents with the knowledge of what Iâve observed, hopefully some can avoid the same issues!
- 4. What is PCP? âşâŻPerson-Centered Planning is a process in which an individual develops a plan that defines a vision for a future event or situation, and creates actionable items to achieve that vision. The process includes helping a person first identify a group of loved ones and others with resources and skill sets the person can draw upon for support through and past a transition into adult life.
- 5. Most common transitions in my PCP practice have included: â˘âŻ Approaching age of transition planning into adulthood (ages 14-20) â˘âŻ Moving out of the educational system and into the adult world, with or without state or federal supports (ages 18-22) â˘âŻ Moving out of parentsâ home and into semi to full independent living situation (ages 25 +)
- 7. What research is showing âşâŻ âAs More With Autism Near Adulthood, Clues To Success Emergeâ http://www.disabilityscoop.com/2015/05/14/as-autism-adulthood-clues/20299/ According to findings from a new study presented in May, 2015, at the International Meeting for Autism Research in Salt Lake City: âThe ability to do everyday, self-care activities like bathing, cleaning and cooking trumped other factors like symptom severity and intellectual functioning âSignificantly, those with the highest self-care skills â whether as adults or in childhood â were most likely to maintain employment, work more hours and need fewer supports on the job, researchers said. âConversely, the study found that adults with autism who had the most difficulty keeping a job were those who exhibited self-care abilities as children that were significantly lower than their IQ.â
- 8. What research is showing âşâŻ Study: Nearly 1 In 3 With Autism Socially Isolated http://link.springer.com/article/10.1007/s10803-013-1833-8 âYoung adults with an ASD were significantly more likely to never see friends, never get called by friends, never be invited to activities, and be socially isolated. Among those with an ASD, lower conversation ability, lower functional skills, and living with a parent were predictors of less social participation.â âşâŻ Study: Characterizing the Daily Life, Needs, and Priorities of Adults with ASD âConsensus among most reports is that the majority of adults with autism spectrum disorder (ASD) have poor outcomes in terms of independent living, employment, and friendship/social engagement. In a recent study by Pellicano and co-authors (2014), individuals with ASD and their families indicated that future priorities for autism research should lie in practical areas that make a difference in daily life. This study replicates and extends those findings from the adult perspective.â K. Gotham1, A. R. Marvin2, J. L. Taylor3, Z. Warren1, C. M. Anderson4, P. A. Law5, J. K. Law6 and P. H. Lipkin7, (1)Vanderbilt University, Nashville, TN, (2)3825 Greenspring Avenue/Painter Building 1st Floor, Kennedy Krieger Institute, Baltimore, MD, (3)Vanderbilt Kennedy Center, Nashville, TN, (4)Kennedy Krieger Institute, Baltimore, MD, (5)Congo Protestant University, Baltimore, MD, (6)Department of Pediatrics, Johns Hopkins University School of Medicine, Baltimore, MD, (7)Pediatrics/Neurology and Developmental Medicine, Kennedy Krieger Institute/Johns Hopkins School of Medicine, Baltimore, MD
- 9. Itâs not new news⌠Social Skills Hamper Job Hopes For Adults On The Spectrum http://www.disabilityscoop.com/2010/07/13/autism-employment-2/9326/ âThe lack of social skills inherent in the autism diagnosis means that a job interview can be the ultimate buzz kill for an otherwise highly qualified applicant, experts say. As a result, studies indicate that fewer than 15 percent of adults with autism are competitively employed.â Daily Living Skills: A Key to Independence for People with Autism https://iancommunity.org/ssc/autism-adaptive-skills âThere are certain skills that these kids are not given through the high school, and it's difficult to transition from high school to independent living with this huge section of training missing.â Sexual Knowledge and Victimization in Adults with Autism Spectrum Disorders http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4131130/ âIndividuals with ASD obtained less of their sexual knowledge from social sources, more sexual knowledge from non-social sources, had less perceived and actual knowledge, and experienced more sexual victimization than controls.â Learning Daily Skills Prepares Kids With Autism for Adult Life http://consumer.healthday.com/cognitive-health-information-26/autism-news-51/learning-daily- care-skills-prepares-kids-with-autism-for-adult-life-699193.html Those who can clean house and make meals more likely to be employed, study says.
- 10. Worst-case scenarios: October 2015: âMan arrested for alleged luring of children in Radnorâ A Philadelphia-area man with autism is being held on $100,000 bail for talking to some children. "He admitted he knew right from wrong," said Detective T.J. Schreiber at a Thursday afternoon news conference, referring to his conversation with Lee after his arrest. âDanielâs mom said that she will teach Daniel that what he did was wrong.â http://www.poconorecord.com/article/ 20151101/OPINION/151109981/101041/ OPINION http://articles.philly.com/2015-10-24/news/67679950_1_daniel-lee-children-woods Concern #1: Was police officer properly trained to recognize disability and/or seek assistance from someone who could help interview? SOCIETAL/SYSTEMIC PROBLEM Concern #2: Did Daniel have the skills to understand the officer during the interview? Concern #3: Did Daniel receive training around approaching children?
- 11. Family had developed a detailed plan to teach 27 year-old son how to take public transportation to his workplace. It involved multiple members of his Circle of Support, and success was anticipated! Me: Todd, if you are walking to the train at the train station, and a pretty girl walks up to you and says âCan you help me? I need 60 dollars and I need you to come with me to look at my car, thereâs something wrong with itâ â what do you think you will do? Todd: âI will give her the money and go with her to her car.â Worst-case scenarios: a recent interaction with a client
- 12. âşâŻ Developing a vision âşâŻIdentifying & inviting a Circle of Support âşâŻ Moving the vision into positive & possible âşâŻIdentifying ways to build strength âşâŻ Listing action items in time increments, with the âwhoâ and âwhenâ Components of a PCP PATH
- 13. Identifying and inviting a sustainable âCircle of Supportâ 1
- 14. Building a Circle of Support Does this sound familiar? âIâm terriďŹed, I donât know whoâs going to take care of my child when Iâm gone!â
- 15. Circle of Support Me 1 4 3 2 1.⯠Circle of intimacy 2.⯠Circle of friendship 3.⯠Circle of participation 4.⯠Circle of exchange See next page for descriptions of each area Identifying a âCircle of Supportâ in the PCP process
- 16. You and I Circle of Support Me 1 4 3 2 1.⯠Circle of intimacy 2.⯠Circle of friendship 3.⯠Circle of participation 4.⯠Circle of exchange See next page for descriptions of each area Individuals with ASD Circle of Support Me 1 4 3 2 1.⯠Circle of intimacy 2.⯠Circle of friendship 3.⯠Circle of participation 4.⯠Circle of exchange See next page for descriptions of each area Doctors Teachers Parents siblings Staff trainer counselor Dr BFF spouse Friend coworker Friend Friend Friend Friend Friend coworker coworker coworker neighbor Study group Workout buddies Book club cousins Aunt & Uncle sisters Social Worker Case Manager Teammates cousins Faith community Identifying a âCircle of Supportâ in the PCP process
- 17. Building a Circle of Support The Barriers âşâŻ âI donât want to bother peopleâ âşâŻ âthis person is really busy, so they probably wonât comeâ âşâŻ âthey live too far awayâ âşâŻ âIâve never had a conversation with that personâ âşâŻ âIâm graduating so they wonât have anything to do with me when Iâm goneâ âşâŻ âIf I ask them to help, they might not want toâ Re-thinking the Barriers âşâŻ You have nothing to lose and everything to gain by inviting âşâŻ Itâs not up to you to decide if theyâre too busy; let them decide âşâŻ People can participate via teleconference if they live far away âşâŻ Making assumptions about the willingness of others to help will continue to isolate you. âşâŻ (for parents) This is not about you, this is about your child â he/ she needs supports and you wonât be able to provide all of them, forever. âşâŻ The PATH meeting will help people identify ways to help!
- 18. Building a Circle of Support Re-thinking the Barriers âşâŻ You have nothing to lose and everything to gain by inviting. âşâŻ Itâs not up to you to decide if theyâre too busy; let them decide âşâŻ People can participate via teleconference if they live far away. âşâŻ Making assumptions about the willingness of others to help will continue to isolate you. âşâŻ (for parents) This is not about you, this is about your child â he/ she needs supports and you wonât be able to provide all of them, forever. âşâŻ The PATH meeting will help people identify ways to help! What happens when they do âşâŻ The PATH meeting will help people identify ways to help! âşâŻ It brings families together. âşâŻ Stress and anxiety are reduced for both the individuals and parents. âşâŻ Parents are better able to manage the âbig picture,â resulting in better outcomes. âşâŻ Individuals become empowered. âşâŻ New friendships are formed.
- 19. Lessons Learned & Taught about Circles of Support âşâŻ Parents cannot manage their adult childrenâs caregiving needs forever âşâŻ fostering relationships that will sustain their children is one of the most important things parents can do âşâŻ People are honored to be asked to help âşâŻ A Circle of Support allows caregiving to be shared, not the sole responsibility of 1-2 people; this helps people enlist & commit âşâŻ Circles of support can adjust over time and need to be monitored. Regular, planned gatherings of members can help ensure sustainability
- 20. Building a Circle of Support âI couldnât believe the people who came, and Iâm so excited about the things theyâre going to do for us!â
- 21. Identifying ways to build strength (and maximize preparedness) 2
- 22. âTell me about your vision for your futureâ âşâŻ Where Iâll live âşâŻ What kind of house I want âşâŻ Who will live with me âşâŻ What kind of work Iâll do âşâŻ What activities Iâll do
- 24. Identifying ways to build strength using the PCP process TYPE HAVE NEED PEOPLE KNOW- HOW (skills) SYSTEMS WELL-BEING
- 25. Identifying ways to build strength using the PCP process TYPE HAVE NEED PEOPLE Parents Peers Counselor Job trainer Rep payee KNOW-HOW (skills) Small income with SSI, P/T job Ride a train Using microwave Budgeting skills Personal safety cooking lessons SYSTEMS IEP Transition specialist at school Day program WELL-BEING Workout equipment at parentâs house Counselor under parentâs insurance Behavior plan Gym membership Continued counseling Adaptive behavior skills
- 27. How to apply the things learned in your PCP to your IEP or ISP. NOW WHAT?
- 28. How to apply the things learned in your PCP to your IEP or ISP: break it down âşâŻFor each piece of the vision, what skills are needed to âşâŻmaximize independence? âşâŻcontinue progress? âşâŻassure safety? âşâŻbuild self-esteem? âşâŻCan these skills be worked on now? How? Who will help?
- 29. Break down your goals into small increments and make sure youâve covered key questions: âşâŻGoal: Independence with meals âşâŻ to max independence: need to be allowed to practice at home and/or a safe environment âşâŻ Identify location(s), overcome barriers âşâŻ To continue progress: need to perform the task regularly, and have a plan to add to the task analysis until max level of mastery is achieved. âşâŻ Parents need help to develop the teaching plan, training to implement it, help from Circle members to generalize it to other spaces âşâŻ Home support, parent training, time commitment How to apply the things learned in your PCP to your IEP or ISP: break it down
- 30. âşâŻGoal: Independence with meals âşâŻ Assure safety: perform a safety assessment, by having person participate âşâŻ Build self-esteem: help person decide on menu, shop for ingredients; invite others to come to dinner, allow person to serve meals; heap praise; provide a tangible reward âşâŻ Circle members can come to dinner, take person shopping, take turns helping with menu How to apply the things learned in your PCP to your IEP or ISP: break it down Break down your goals into small increments and make sure youâve covered key questions:
- 31. How to apply the things learned in your PCP to your IEP or ISP: match it up âşâŻBe true to the vision and match your IEP/ ISP goals to the actual intended environment. âşâŻGoals can sound the same but look very different, depending on what the future looks like.
- 32. Match up the skills with the anticipated future environment Vision âşâŻLive in apartment with roommate Skills needed âşâŻ Negotiate chores & house rules âşâŻ Respect privacy & property âşâŻ Respond to landlord âşâŻ Pay bills âşâŻ Laundry âşâŻ Cooking âşâŻ Grocery Shop âşâŻ Transportation âşâŻ Phone skills âşâŻ Emergency response âşâŻ Basic home maintenance How to apply the things learned in your PCP to your IEP or ISP: match it up
- 33. Vision âşâŻLive in a group home Skills needed âşâŻ Travel safely with others âşâŻ Prepare food and eat with others âşâŻ Respect privacy & property âşâŻ Share common areas and property âşâŻ Limited bathroom time âşâŻ Ask for help âşâŻ Ask for privacy âşâŻ Follow a schedule âşâŻ Tolerate diverse activities âşâŻ Adaptive Behavior âşâŻ Leisure time management Match the skills with the anticipated future Match up the skills with the anticipated future environment How to apply the things learned in your PCP to your IEP or ISP: match it up
- 34. Vision âşâŻHave a part-time job Skills needed âşâŻ Time management âşâŻ Responding to authority âşâŻ Understanding break time âşâŻ Communicating concerns/ asking questions âşâŻ Following written instructions âşâŻ Signing paperwork âşâŻ Budgeting âşâŻ Transportation âşâŻ Appropriate clothing Match the skills with the anticipated future Match up the skills with the anticipated future environment How to apply the things learned in your PCP to your IEP or ISP: match it up
- 35. Vision âşâŻParticipate in Community-Based Day Services Skills needed âşâŻ Travel in groups âşâŻ Be ready to leave on time âşâŻ Identify their name (for labeled items) and personal items âşâŻ Follow directions âşâŻ Introduce oneself âşâŻ Indicate they need help âşâŻ Understanding activity schedules âşâŻ Self-calming âşâŻ Leisure activities Match the skills with the anticipated future Match up the skills with the anticipated future environment How to apply the things learned in your PCP to your IEP or ISP: match it up
- 36. How to apply the things learned in your PCP to your IEP or ISP: match it up âşâŻThis is where you can present a personâs vision and goals as defined during the person-centered plan; show the team what the hope for the future is, then spend the time with your school or program to match up the skills they need in that environment.
- 37. âşâŻ Teach to the norm, not to perfection! âşâŻ Revisit what goals are being worked on, and reassess what the expectation is for âmastery.â âşâŻ Reprioritize, because the clock is ticking! Match up the skills with the personâs own, personal anticipated level of âmasteryâ How to apply the things learned in your PCP to your IEP or ISP: match it up
- 38. How to apply the things learned in your PCP to your IEP or ISP: think in âfootstepsâ âşâŻ âIâm going to learn to get on the train and get off the train at the place where I work.â âşâŻ âfootstepsâ: visualize this activity. âşâŻ what could happen on the way to the bus, inside the bus, and after getting off the bus before arriving at work? âşâŻ What do we need to teach to cover these scenarios?
- 39. Skill Needed Exercises Seek emergency help Dial 911 or push emergency button, visit first responders Pay bills Basic budgeting workshop, maintaining a calendar at home Household chores Carry laundry, sort & put away clothes Cooking Plan, shop, cook 1x/week; learn to load a Crock Pot Grocery Shop Accompany parent 1x/week, fetch 5 items; unload cart onto belt Build Friendships Call a friend once a week; arrange a meetup; have a monthly BBQ Boots to the ground: Real examples of what families have done
- 40. Takeaways âşâŻ A vision is only as good as the rendering of a result. âşâŻ Any vision of the future requires taking inventory of current strengths, ways to build strength, and knowing how to achieve them. âşâŻ We need to be thorough in our thinking; break down each element of our vision and try to consider all possible scenarios. âşâŻ Creating action steps based on the skills needed, instead of simply thinking conceptually, leads to greater outcomes. âşâŻ By identifying skills needed and actions to take to build them, school teams and Circle of Support members typically begin to offer up ways they can help; they become invested in the vision because they understand it and realize how they can apply their own individual (or team) strengths to be supportive. They commit. âşâŻ Do not get mired in the highest possible outcome for any goal. Many goals can be achieved, they just might need to be achieved with modifications. Thatâs still a success!
- 41. Thank you for joining me! âşâŻ One stop for every possible way to reach me: âşâŻ www.about.me/cherylryanchan âşâŻ Todayâs slides: âşâŻ http://www.slideshare.net/cherylryanchan âşâŻ My sites: âşâŻ www.personcenteredplanning.com âşâŻ www.successfultransitions.org âşâŻ Clipart provided by: http://www.clker.com/
Hinweis der Redaktion
- Welcome, everyone, and thank you for joining me tonight! Iâm a nerv
- Even though PCP has been around since the early 70âs, âPerson-Centered Planningâ is a term we are all hearing more often now, because State and Federal level decisionmakers across the country are developing policies and procedures that require educators and service providers to take this approach. Unfortunately, itâs becoming a generic catch-phrase; people are using it to describe what they have always been doing, which is far from person-centered. Traditional practices are service-centered and provide little regard for individualized, person-centered development of supports. Real Person-Centered Planning uses specific tools and processes that require the development of an individualâs dream to be defined by the individual and considered as the source of planning throughout the process. While I absolutely applaud schools and service providers who employ person-centered practices, often when they are in charge of the process they are to an extent bound by the conditions of their own agendas; meeting timelines, meeting policies and regulations, standards and requirements, and working within a budget. Likewise, when parents are in charge of the process, they apply their own vision for their child instead of truly putting the childâs own vision at the center. That is why Person-Centered Planning facilitators play such an important role in the process; they are free of agendas or pre-conceived notions of a personâs dreams, abilities or limitations. They are able to be truly, 100 percent committed to the individualâs true dream in its purest form.
- As I mentioned when I talked about why I put together this presentation, over the course of my practice, my colleagues and I began seeing patterns that concerned us that all had to do with gaps in critical skills. These gaps were literally halting progress and derailing the visions that people were defining. And the patterns were obvious: people were not being given appropriate training and education in the areas of independent living skills, activities of daily living, personal safety awareness, advanced social skills and adaptive behavior for the adult world. I was alarmed, to say the least, so I began researching.
- When my colleagues and I started looking at what research is showing us about outcomes for individuals with autism, we found that our concerns were not unfounded; when people fail, itâs often not for reasons we might think. Most of us might first think that reasons that people with autism are struggling in adulthood have to do with systemic issues: lack of jobs or lack of support services, lack of residential placements, etc â while these are certainly true, this was the kind of reports and data that I kept finding. (read)
- The truth is somewhere in the middle between systemic issues, societal issues, and preparedness, certainly; however, there is no question that lack of preparedness in key areas of independent living, self-care and personal safety is contributing to underemployment, isolation, and mental health concerns among this population.
- In addition to research, media attention has been increasing as reports emerge of individuals being chronically unemployed, victimized, lost, injured, or accused. These lead to investigative reports, editorials and blogs focusing on the gaps in education and preparedness that we keep seeing in our practice.
- Even as our education system and public policy make progress in the area of providing community-based opportunities for people with autism, we continue to see tragedies like this that are not strictly a product of our societyâs intolerance. This incident became headline news in October and was covered by multiple media sources in the Philadelphia area. Talk about a disconnect! (read)
- This is a real-life case that happened in one of my own Person-Centered Planning sessions. (read) There was a collective gasp by the Circle of Support members. Later, the father said it was the most eye-opening and heart-wrenching moment heâs ever had. I am going to be using this example a few times today to illustrate the lessons Iâve learned and the ways you can apply strategies for better planning.
- So, convinced that the patterns we were seeing were indicative of what research is saying, my colleagues and I began to modify our process to include a âzoom inâ to these areas during the course of the development of the plans we facilitated. We felt we would best serve our clients by calling attention to critical living skills and the importance of relationship building for sustainable quality of care and support. These are the 2 areas I want to discuss in this presentation. Then, weâre going to talk about how to apply your PCP to IEPs and ISPs.
- Weâll start with Identifying and inviting a Circle of Support.
- I can already hear what a lot of you are thinking â I donât read minds, but in nearly every instance that we meet with families and start this conversation, it starts like this. We are a society that has conditioned ourselves to think that asking for help is a sign of weakness or inability. Without getting up on a soapbox, my eyes have never been more open to the tragedy of these beliefs than the last several years since I began doing PCP. The stress of this very statement has been documented to be the source of physical and mental health issues, damaged or destroyed relationships, and traumatic outcomes for children. So much of it is unnecessary if we change our attitudes about accepting help.
- This is the graphic illustration we use to assist individuals and their families in identifying who is currently in their life, who provides varying degrees of support, security, and with whom they have close relationships. There are other forms of PCP that use visuals similar to this, so it may be familiar to some of you.We talk about how each ring of the Circle from the inside outward represents people who are intimately known, followed by friends, people they see frequently and are familiar, then people who are paid to be part of their lives.
- Sadly, hereâs the reality of what we commonly find out during this exercise. Individuals with ASD are far more isolated and their circle contains a few close relatives and then service providers â thatâs it. Families often admit that even when they have large families, the number of family members they actually trust to be supportive is small. This is admittedly the most awkward and difficult part of the PCP process. The difficult part is that it forces people to realize their isolation, and then facilitators press for families to think harder about who might be included. By framing questions about the personâs daily life, we are always able to add to their circle; but then comes the awkward part; we ask them to reach out to those theyâve identified in this exercise, and invite them to the next meeting where we do the Person-Centered Plan.
- People are afraid to take this step. We hear all sorts of concerns: âI donât want to bother people,â âthis person is really busy, so they probably wonât come,â âthey live too far away,â âIâve never had a conversation with that person,â âIâm graduating so they wonât have anything to do with me when Iâm gone.â For each one of these concerns, we facilitators need to gently but firmly guide people to a greater level of comfort and commitment. Here are some of the ways we assist people in rethinking the barriersâŚ(read)... Some of these might not sound so gentle...the points that usually drive it home for people are those last 2, and the final one in particular. I often ask clients how many times people have said âlet me know how I can helpâ and you canât really come up with anything because youâve done it all yourself.
- One of the greatest outcomes we see in this process is that the people who attend the Person-Centered Planning meeting as Circle members, end up identifying for themselves how they can help as the plan unfolds â but thatâs not the only outcome. It brings families and communities together. Stress and anxiety are reduced for both the individuals and parents. Parents are better able to manage the âbig picture,â resulting in better outcomes. Individuals become empowered. New friendships are formed.
- This last takeaway is an important reminder, that can often be helpful to keep in mind; we tend to think that once something is decided, it canât be changed. Circles of Support will naturally change and evolve. How many of us keep the exact same friend group weâve had since we were teens? Allow and embrace new people who will come along and become your childâs supporters. Sustain them by regularly reminding them of the important role they play in your childâs life and yours. Foster relationships between the group by hosting gatherings, creating FB pages, etc. so they all can rely on each other as well and feel like they are a part of a village.
- Once parents and family members have taken this brave step, this is what we often hear. No one said this would be easy, but you are not alone!
- So weâve talked about the first area I wanted to focus on: building a sustainable support system. As I said, the second is about building strength and preparedness, particularly in areas of independent living and personal safety. In Person-Centered Planning, we begin doing this by identifying âways to build strength.â
- But first, you need to get an idea of the steps that are taken before we begin our strengths inventory. The very first step taken in the PATH meeting is typically the most fun and definitely the most eye-opening. The individual is asked to describe his or her own vision for their future â their Dream, if you will. It doesnât need to be possible; we ask them to describe their dream future without thinking about any barriers. Iâve seen dreams that include palaces on the ocean, tvâs in every room, robot maids, basketball courts and swimming pools in the basement. Once this exercise is complete, we move to making that dream into the possible and positive, called GOALS. It is here that we begin developing the plan. It is here that we see descriptions that list things like this emerge (READ)âŚand so we take it from there. This is where the âperson-centeredâ concept is truly honored. Momentum has begun, and the ideas come fast and furiously.
- Shortly after these goals have been identified, and a timeline is agreed upon for when these items need to be achieved, we pause the momentum to take a look at the NOW â the personâs current situation. This helps us visualize the stretch and the work that needs to be done to go from now to the goals. So far, the process is talking about activities, events, locations, current status and future vision â but we have mostly been talking about the physical and environmental aspects. This is where we begin to talk about ways to build strength, and where often, reality begins to hit, because we identify specifically what the person needs to do; and that implies whatâs missing.
- This is the graphic we use to develop the list of ways to build strength. Drawing from the âNOWâ we fill in what the individual already has; drawing from the goals, we begin to identify what they need.
- Here Iâve filled in the chart with examples. You can see that this inventory of what we have leads us to realize what skills or resources we need to carry them over into the new environment. Remember our early example of a worst-case scenario, with Todd who knew how to ride a train but when we pushed a little deeper into what that looked like, we realized he didnât know how to keep himself safe while using that skill. It was during this part of the process that we identified personal safety as something he needs. Letâs look at another example: your child may be working on job skills â which is great â but are you still handling their money? Do they know how to manage their money (and are they capable of doing it?)? To what extent can and should they be able to budget their money, perform a purchase, write a check? Recently during a plan I was facilitating, the person had recently learned how to take their own medications, by using a daily pill box with the days of the week. The person was planning to live on their own, with some drop-in assistance. The parents realized during this part of the process that their daughter would need to know how to determine when she was running out of medication, and how to order refills. So under have we listed self-dosing of medication; under need we put training on refills.
- Following âways to build strengthâ, the remaining steps of the PCP process do a deep-dive into the timeline and identify action items that need to be taken to achieve the goal. I love this part because it is the most collaborative and engaging aspect of the process, and above all it makes so much sense that peopleâs jaws drop when they see it all together. Nearly all of the tools with Person-Centered planning involve creating action items; the concept of listing the first and next steps is where everyone comes together and commits. This is the time that you begin to see how to apply the things youâve developed in the plan to your IEP or ISP.
- So letâs go there - letâs talk about some examples of HOW to apply the things learned in your PCP to your IEP or ISP. There are 3 strategies I like to use to help me build my list of things to present to teams and to jump-start valuable conversations. They are: break it down, match it up, and think in footsteps. Any or all can be used at any time.
- My first strategy is simple: break down every piece of the goals section of your plan, and name the skills that are needed to maximize independence, continue progress, assure safety and build self-esteem. These speak to the adult world and some of the key concepts that we have found are missing as people arrive at 18 or 22. Keep this as a checklist to help you remember the key areas. For each piece, what are the actions that need to be taken? This is a formula that can be applied over and over again. Remember that youâve worked hard to identify the goals that will get you closer to the vision you created, but itâs going to take work, and each piece has some important elements that cannot be overlooked. By breaking it down, you can avoid the dismantling of a goal because you missed the forest through the trees.
- Just as we cannot expect parents and families to teach all the necessary independence skills, itâs unrealistic to expect that schools can do it all either. More than ever before in your childâs life, collaboration and cooperation are critical. At school and at home, there are restrictions around facilities, staffing, expertise and educational requirements that will interfere with some of the kinds of skills that need to be worked on. Be creative. Letâs take a look at one very common goal that people often identify in person-centered plans: having the person gain skills around independence with meals. Now of course, there is a whole array of definitions of âindependenceâ and we are going to talk about that later, but within this goal, there are ways to break it down to essentials in any case:
- So now youâve identified some great goals in your PCP â it would be great for your child to be able to cook on his own or with minimal assistance! But wait a minuteâŚis that even going to be allowed in the group home, or the supported living situation where theyâre going? Youâve decided your child can learn to shower themselves and dress themselves. But wait â have they ever had to take turns with a roommate? Can they adjust the time of their shower if their work schedule doesnât give them time to do it in the morning, because the van arrives early? Youâve decided that your child can learn to do a simple purchase at the grocery store. What if the agency requires the people they support to use debit cards? Did you check? You need to do some thinking and researching about what the intended environment for your child will look like, and spend the time with your school or program to match up the skills they need. This is where you can present a personâs vision and goals as defined during the person-centered plan; show the team what the hope for the future is (read).
- I think this is so important, Iâd like to illustrate it by taking a look at different situations and seeing how different the matching skills are. Different environments require different skills, and some skills are not appropriate to the environment so they should not be on the list of things to work on.
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- So now youâve identified some great goals in your PCP â it would be great for your child to be able to cook on his own or with minimal assistance! But wait a minuteâŚis that even going to be allowed in the group home, or the supported living situation where theyâre going? Youâve decided your child can learn to shower themselves and dress themselves. But wait â have they ever had to take turns with a roommate? Can they adjust the time of their shower if their work schedule doesnât give them time to do it in the morning, because the van arrives early? Youâve decided that your child can learn to do a simple purchase at the grocery store. What if the agency requires the people they support to use debit cards? Did you check? (read)
- Along with environment comes matching to the true level of mastery a person has. The last few years of school are not a time to continue to work on skills that havenât been mastered over several years, where âmasteredâ means perfection or near-perfection or someoneâs definition of what it must look like. Itâs time to shift the focus to real-life, practical skills. â but most importantly, to the real-life, practical skill levels achievable for your child. Further, where the maximum skill level is likely unachievable, itâs time to shift the expectation. Time is running out. Your child hasnât learned to wash his hands thoroughly or avoid scalding hot water using a lengthy task analysis â replace it with a bottle of hand sanitizer and move on. Your child has struggled with zippers and shoestrings â order elastic waist pants and slip-ons, and move on. Itâs not going to matter if his hands are clean when heâs approached by a stranger and hasnât been taught how to keep himself safe. Using that example; your child has been taught to say âhiâ to anyone who says hi to them in their social skills group â teach them to say âhiâ then walk away, or stand closer to their caregiver. Iâm not an expert, so these are some bad examples â but you get the idea. Time is of the essence, and while none of us on the team we can think of everything, we can do better by thinking about the realities and prioritizing.
- Hereâs my final strategy that lends itself to what I hope youâve heard in this presentation. I call this âThinking in footsteps.â The best way to describe this is to recall once again, the story I told of my own experience when I asked the Todd about the hypothetical situation where a young woman approached him. I thought of that because I visualized the activity â I walked in his footsteps in my mind. I also saw a lot of people moving quickly around him, I heard a lot of sounds; loudspeaker announcements, trains arriving, bells ringing, wheels squeaking. Does Todd have sensory issues that he needs coping strategies for? I saw the train schedule change â Toddâs train was cancelled. Does Todd know how to read the schedule board and determine Plan B, and/or ask for assistance? If he needs to call someone, can he make a call or send a text appropriately? If not, what skills should go on the plan? These are steps that need to be taken along the way before Todd is truly ready to take the train.
- Here are some great examples of how skill building has been translated into exercises that are realistic to an adult lifestyle. Often, families report that schools are unable to work on some of the goals that they canât replicate because they are specific to home or community environments. By all means work with your school team to be creative, but donât decide they canât be worked on â this is where your Circle of Support can be called upon! Iâve seen numerous examples of PCP participants step up to the plate and volunteer to work with the person and the parents.
- I know I have given you a LOT to think about. I hope that I have started you on your own path to becoming better prepared and equipped to help your child or loved one be as prepared as possible for their transition. I invite you to revisit todayâs slides, take a look at your IEP or ISP, and maybe apply a few things you may have learned. I prepared this presentation because of the alarming patterns I continue to see in the area of preparedness and practical skills for young adults with autism. I am not an educator, nor a transition specialist, nor any kind of licensed professional â but I am passionate and seasoned as a Mom myself. I would love to hear your thoughts on this presentation, and I welcome questions at any time. Thank you!